Not here for sympathy, just want to share what I told my mom when she found out today that my dad has Parkinson's with lewy body dementia on top of Alzheimer's disease. At least that's what she was told by the neurologist. This is based on the results of a DAT scan as well as his clinical presentation. He has had a little response to levodopa, and his neurologist is now going to increase his dosage to see if that improves anything as well. He has had dementia for about 2 years now. He has no tremor. He does have a lot of stiffness and shuffling gait, as well as bradykinesia and very poor cognitive function. He is 77 years old. Also of note, he is a type 2 diabetic, long time smoker, and has hypertension.
A little background on myself, I have had young onset Parkinson's disease for 10 years, since the age of 45. In that time, I have tried everything there is, pretty much, within reason, and I found that different things work for different people. Two things I found help the most are Thiamine HCL (vitamin B1) therapy and lithium orotate therapy. I have convinced myself that these things have slowed down the progression of the disease for me, and even restored cognition that I thought was lost or never even present. One thing about cognition, I always surrounded myself with very smart people as I worked in the medical field with doctors of all kinds of specialties. For years and years, it always behooved me how much smarter and sharper than me everybody was, and I always wondered, what was I missing? After just a few weeks of lithium orotate therapy, these people started to tell me things like, I am the smartest person they know,. This is something I never thought I'd hear people saying to me, And they were saying it more and more.
This is what I recommended to my mom, who is the primary caregiver of my dad. Sharing because I think it will help a lot of people, not just my dad.
"This site has information on B1(thiamine HCL) therapy. Dr Costantini took care of me from Italy through email. he was an absolute genius but unfortunately he passed away. highdosethiamine.org/
This book was written by someone I know based on Dr Costantini's work, and I am quoted in it. I gave my copy to my neurologist. a.co/d/5dvT2pU
So based on my knowledge of B1 therapy, I would give Dad 4000mg Thiamine HCL {B1} per day. It takes about 6 weeks to see results. Side effects are extremely rare and are usually just if you're allergic to something else in the pill or sometimes agitation.
The other thing is Lithium Orotate 5mg to 20mg per day. Start with 5mg, after 2 weeks if no noticeable improvement in cognition, increase by 5mg and reassess every 2 weeks. Going up in 5mg increments up to 20mg max. Per day.
You can share all of this with the doctor and you can get me on the phone with them at the next visit if you want. I work with a huge group of people with Parkinson's and their caregivers around the world and these 2 therapies are very safe and effective. I hope you will try them because in my 10 years of experience with this, I think it's the best chance we have. And at this point there's nothing to lose.
Also get rid of the cholesterol statins!"
Here's a link to a great book about lithium orotate a.co/d/d8XvsI5
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bassofspades
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These days every generation of professionals needs and their own new drum to beat in order to "justify their professional existence." (It's a quote because it was said by a professor of mine way back long ago, but it was a very good professor, he was a Yale psychology PhD, and in those days the requirement for a PhD in clinical psychology was " to get a PhD in psychology here at Yale you have to be essentially the world's expert in whatever narrow area you have chosen for your dissertation." And he told me that everybody every generation everybody sells... EVERYBODY SELLS. So that every new generation of professionals has to come up with something, even if it is just a new name on an old twist, whatever it is it doesn't matter, they have to come up with something that is their own contribution to extend the professional knowledge, in order to " justify their professional existence. " And to get research money, lots and lots and lots of research money.
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And today the big phrase, although people don't actually practice what they preach, is "evidence-based." A great phrase. A TRULY GREAT PHRASE. BUT NOW, SINCE THEY HAVE MADE THAT THE BAR, THEY HAVE TO LIVE UP TO IT AND WE HAVE TO HOLD THEM TO IT. Now that they talk about it so much and that is the current fad, hold them to it. Where's the evidence? What is the weight of the evidence? Is it real evidence or is it you just dressing up your own subjective feelings, you're own interpretation doctor, not subjecting yourself to the same supervision everybody else has to have, not examining your own practice for the same source of error that you would expect of others and researchers and engineers and scientists do. Where's the evidence? And if, applying examination, HONEST examination that is as independent as you can make it, and is objective as you can make it, because that is what the phrase "evidence-based" actually does mean, then lacking sufficient proportion of evidence (including PROPORTION), where are you in discounting your original impression or conclusion and going with the evidence? And if the evidence doesn't show enough evidence, where are you dropping your hypothesis, as you would have to do if you were going by the evidence? So drop it until you have the evidence. But keep looking for the evidence so you can't just simply say there's no evidence because I didn't look for it.
So keep asking these so-called professionals: are you truly evidence-based, like you are selling so hard, and if you are evidence-based, where is the evidence to support the positive conclusion? Does it justify your conclusion? Does the proportion justify your conclusion? Does the "weight of the evidence" support your conclusion? And if the evidence is not there, enough to support a positive conclusion, where are you showing witness to me that you're going with the evidence and if the evidence shows an absence, show me that you too are accepting the absence of evidence, and suspending any prejudice you may carry over? Show me, doctor, that you can be a scientist as well as a doctor. Show me you're not a hypocrite and that you are trained professional, and conclude what the evidence drives you to conclude. That is what you can say. That is what you must say. Later on, there will be an opportunity to reevaluate, based on, wait for it..."evidence."
And by the way, here's a little tiny piece of information that tells me you know what you're talking about and don't let everybody just second-guess you: you spelled Costantini's name right. Virtually nobody else does.
I actually misspelled his name one time and I caught it immediately, and went back and edited it! Lol. MarionP I always had respect for you because you're smart, you take the role of devils advocate and you're a straight shooter. There's evidence that backs up what I'm talking about in both cases - lithium orotate and thiamine HCL. The first time I saw Dr Costantini's before- and-after videos of his patients, I nearly started bawling my eyes out because I was overwhelmed with hope. And as for my lithium orotate therapy, I used to see a very wonderful doctor from Lakeland, Florida named Dr S Todd Robinson Jr. He knew more about Parkinson's than anybody else I ever met because he had many family members that suffered from PD and he was worried about getting it himself. He insisted that I read the Lithium book straight away. He also taught me all about the Hinz Amino Acid protocol, which is very controversial, (not to mention , cost-prohibitive) but it works. Unfortunately, he passed away. But he left me with a huge list of things to try, which I wrote about here healthunlocked.com/cure-par...
He's in New York, I'm in Florida. My mom is his primary caretaker and she really resists doing anything that I suggest because she only wants to do what his doctor tells her to do. I think she's in over her head really. I tell her to call me when she's at the doctor with him and put me on the phone with the doctor, but she never does. I tell her have the doctor call me, but she never does. I told her about carnivore diet, she doesn't do it for him. It's frustrating, but I understand she's from a different generation where you don't question the doctor. My dad was actually one of the first physician assistants in the country, and he was a really great one. The stories he used to take home from work are what inspired me to get in the medical field myself. Although I never trusted my brain to become a doctor until I discovered Lithium which, by then, was way too late.
Well, I talked to my mom yesterday about my dad's situation. We talked about the supplementation and all that stuff, and we decided that it's probably too little, too late, he's too far gone to make a noticeable difference, we're just prolonging the inevitable, The regimen is too complicated for my mom, so just keep him happy. Even the doctor says, If he wants a piece of cake, give him a piece of cake. I asked my mom if my dad has any opinion on the matter, and she said it absolutely none. He just watches reruns of '70s TV shows, doesn't fuss about anything, doesnt really speak much, brief yes or no answers to questions. He doesn't seem to want to fight it or even know what's going on. Blissfully oblivious, I guess. Pass dad a piece of cake please.
Thanks for letting me vent here. No replies necessary. Just sharing my thoughts and story. Sometimes we go down swinging. Sometimes I guess you just bow out gracefully.
Update - I went to my neurologist to ask him if Lewy Body Disease is something I need to worry about for myself, do I need to get tested for that, is it hereditary,that sort of thing. He said there's no possible way that I have Lewy Body disease based on my cognitive function being what it is. THAT'S A HUGE RELIEF!
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Which brand of Thiamine HCL?
B1 Question ( nothing comes easy )
